Important Facts for Birth Defects: Overall

Definition

Numerator

Number of cases of specific birth defects (includes all pregnancy outcomes).

Denominator

Number of live births among Utah resident mothers regardless of location.

Data Interpretation Issues

Only birth defects identified in the National Birth Defect Prevention Network (NBDPN) list of recommended birth defects are reported for this IBIS indicator. For the prevalence of other birth defects, please contact the Utah Birth Defect Network (UBDN). The list of NBDPN recommended birth defects can be found here starting on page 5: [https://www.nbdpn.org/docs/Appendix_3_1_BirthDefectsDescriptions2015_2016DEC14.pdf]
Please note: The UBDN does not collect club foot. In 2014, the UBDN stopped collecting primary Atrial Septal Defects (ASDs).

How Do We Compare With the U.S.?

Overall comparisons of birth defect rates with the U.S. must be interpreted with caution because each state may collect the data differently. The overall rate of birth defects in Utah is generally in line with what is expected based on national and international levels. Data from other states is available at the National Birth Defects Prevention Network (NBDPN) website ([https://www.nbdpn.org/ar.php]).

What Is Being Done?

The Utah Birth Defect Network (UBDN) is a statewide population-based surveillance system that monitors major structural birth defects of all pregnancy outcomes (live births, stillbirths, and terminations) among Utah resident women. The mission of the UBDN is to prevent birth defects and secondary disabilities by monitoring occurrence, referring to services, facilitating research, and providing education and outreach to children and families in Utah. The UBDN is a program under the Bureau of Children with Special Healthcare Needs, Division of Family Health and Preparedness, Utah Department of Health.
Surveillance, research, birth defect prevention, and referral to services are keys to reducing infant mortality associated with birth defects. For surveillance, the UBDN currently contributes to tracking and assessing impact, trends, and disparities related to major structural birth defects overall, and their related mortality. For research, the UBDN collaborates with researchers locally, nationally, and internationally to help improve scientific knowledge on birth defects and to contribute to the development of evidence-based interventions that reduce risk of birth defects and its associated negative health outcomes. For birth defect prevention, the UBDN works with Utah communities to provide information and resources on how to reduce risk for birth defects through engaging in healthy lifestyles, avoiding environmental hazards, and talking with healthcare providers. For referral to services, the UBDN aims to help families with children with birth defects identify and access resources in their community. The UBDN has partnered with Utah's early intervention program (Baby Watch Early Intervention Program) which provides services and support for children with developmental delays and disabilities from 0 to 3 years old.
UBDN is also active nationally within the National Birth Defects Prevention Network (NBDPN), a non-profit organization involving birth defect programs and individuals working at the local, state, and national level to raise awareness for birth defects. The NBDPN is committed to the progression of surveillance and research, to identify factors for prevention and assist families to minimize secondary disabilities. (For more information, see [http://www.nbdpn.org]).

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